It's been almost two and a half years since I wrote my previous post on LessWrong . A lot has happened since then regarding the state of my illness and my beliefs about the world. I've been meaning to write this post for quite some time, but due to various reasons that I will get into later in this post, [1] I haven't managed to write it until now.

In the spirit of " it's about the process, not the conclusion ", I try in this post not so much to give polished convincing arguments to try to "prove" conclusions that I believe. Instead, I will describe what beliefs I started with, what happened to me over the last seven years (and especially the past two years), and then try to show you my process of making sense of all of what happened to me and what beliefs I ended up with. There is a trickiness here in that "what happened to me" isn't objective evidence that I can pull up for you in the form of a mathematical proof or a statistically rigorous replicated study. How you handle what happened to a random person on the internet is ultimately up to you, but I hope to demonstrate at the very least that I am of sound mind and that what happened to me is worth taking seriously.

There is also somewhat of a reference class problem when interpreting my anecdote. As I explained in the summary section above, and will explain in more detail over the course of the post, I've slowly improved my health over the past two years and I attribute this improvement to brain retraining. If one uses a reference class of general chronic health conditions, the obvious objection is that perhaps I just improved with time, regressing back to a healthier mean. I think this conclusion would be mistaken. It seems important in interpreting my anecdote to be familiar with the "complex chronic illness space" (which includes illnesses such as ME/CFS, MCAS, mold illness, post-viral illness, long COVID, chronic Lyme disease, dysautonomia, POTS, Ehlers–Danlos syndrome), where, generally speaking, the longer one has been ill, the more hopeless one's situation is. When I used to browse the long COVID community r/covidlonghaulers , it was generally considered that 2 years is the cutoff of when "got better with time" (i.e. regressing back to health) is still possible; after one has been ill for 2 years with no improvement (or worse, gradual decline as in my case), people start saying they will be stuck with it for life unless they find something that works. One can easily find cases like Whitney Dafoe (ill since 2004) and Physics Girl (Dianna Cowern) (ill since 2022) and Toni Bernhard (ill since 2001) to see how stable these conditions can be. In what follows, I am expecting readers to at least somewhat be familiar with these conditions, so as to be able to situate my anecdote within this reference class.

One thing that has consistently annoyed me about other people who talk about "woo" topics is that they tend to get "sucked in" to the framing/jargon/metaphysics of that woo topic, such that from the outside they sound insane. And they do so without trying to bridge the gap with a general audience at all , despite communicating with people "on the outside". In such cases, my reaction has been "What you are telling me sounds insane, and you also seem insane, so I have no choice but to just ignore you and avoid doing whatever you did so I don't become insane like you." I am explicitly trying to avoid this mistake, i.e. I am explicitly trying to bridge the gap – to be concrete, between the me-of-2023 and the me-of-2026. There are many nearby misunderstandings of what I am about to say, such that if I say one thing, like "the mindbody method essentially consists of showing your brain that you are safe", people will hear any one of about ten things, none of which are correct. Communicating this stuff is hard. That is (partly) why this post is so long, and also (partly) why it has taken such a long time to write and why it has felt so difficult to write. [2]

To give some more context for people who may not know anything about me, I have been experiencing many strange physical and mental symptoms since 2019. As best as I could make out at the time of writing my post in 2024 , the trigger for these symptoms was a flu-like viral illness I contracted in April 2019 while traveling in the UK (I am from the US). The flu-like illness lasted around two weeks, with typical symptoms like sore throat, cough, fever, and mucus drainage. It was a particularly intense viral illness, on a level that I don't think I had experienced since childhood. At the time, I didn't think much of the illness. But after the initial illness ended, I started to get strange new symptoms. These included panic attacks, shortness of breath, brain fog, difficulty swallowing, early satiety, nausea, heart palpitations, difficulty regulating body temperature (mostly heat intolerance), tremors, dizziness/vertigo, weakness, caffeine and alcohol intolerance, orthostatic intolerance and POTS, hunger attacks, tinnitus, afterimages and visual snow, fatigue/heaviness/frailness, the development of food intolerances, salt intolerance, peeling lips (exfoliative cheilitis), and more. (I will go into more detail on the symptoms later in this post .)

Initially I would spend most of my time feeling pretty normal, and the symptoms would occasionally appear as "attacks" that I would have to deal with. But starting around mid-2020, this dynamic inverted, where the symptoms would be pretty much constant, with tiny pockets of relief such as during sleep. [3] These symptoms would also confusingly "rotate" so at any given moment in time I may be dealing with three or four symptoms, while the others would be "dormant".

For various reasons, mainly my belief that my symptoms were a result of anxiety, I did not seriously pursue medical treatment until 2022. Starting in 2022, I made it my full priority to work on my health as a physical health issue rather than an anxiety disorder. I worked with a speech pathologist for my swallowing difficulty, which did nothing, and then starting in late 2022 I started working with a naturopath. The naturopath did a bunch of tests on me, one of which was a stool test, which showed I had gut dysbiosis (I got a 10/10 for gut dysbiosis on the Genova Diagnostics GI Effects stool test). I also did a SIBO breath test, which showed I also had SIBO. Based on these test results, and the fact that I could not swallow any pills on account of my swallowing difficulty, my naturopath prescribed me several liquid antimicrobial herbal remedies to wipe out the bacterial and fungal pathogens in my gut. These herbal remedies made some of my symptoms better, made other ones worse, and overall I felt like I was in much the same place, and possibly worse off than before I started.

After the gut protocol failed, I continued seeing many more doctors and trying even more treatments. In total, I think I have seen 3 primary care doctors, 8 naturopaths, 2 physical therapists, 1 allergist, 2 ear-nose-throat (ENT) specialists, 2 speech pathologists, 1 sleep specialist, 2 pulmonologists, 4 nutritionists/dieticians, 1 gastroenterologist, 1 endocrinologist, 2 proctologists, 2 psychiatrists, 3 therapists, 1 breathing coach, 4 general health coach type people (I counted some people under multiple categories, but it's over 30 distinct people in total).

Some of the treatments and palliatives I tried were (feel free to ask me about any of these):

As you can probably guess, none of these things really helped. Most things did nothing, even for the local thing they were trying to improve. Some things, like Buteyko breathing, capnometry biofeedback, MiraLAX, and various anti-anxiety supplements/medications, did help with the local symptom without producing too many undesirable side effects, so I kept doing those things, but they did not meaningfully change my overall condition. Overall, trying the combination of all of the things listed above made me worse off compared to the start of 2022.

Occasionally in the rationalist and effective altruist blogosphere I encounter posts with titles like "Have You Tried Applying Agency to Your Personal Problems?", you know, like this one , [4] and these always feel so disconnected from my own experience.

No, I totally did think of all of those things and, in fact, tried them all, while having all of the symptoms I've described.

The above sets the stage for my previous LessWrong post . On May 27, 2024, I published my previous LessWrong post. I was tired of my existence. I was upset at the universe for allowing someone to exist in such a state for so long. It's hard to overstate how bad life was at this stage. Life becomes very small. You do things, you get massive symptoms, and you start making rules like "don't go outside when the temperature is 24 degrees Celsius or higher", "always pack both normal food and a PROBAR and a Kate Farms shake when going outside, so that you can keep eating, because if you don't eat all the time you will have horrible hunger attacks", "eat only mandarins for breakfast because other foods unpredictably cause hunger attacks when eaten first thing in the morning", "exercise only by walking in circles in the backyard, because jogging worsens symptoms afterward and going to the park could result in not being able to return home safely". And the rules get more and more numerous and onerous over time. But also I was not willing to give up. As my health kept declining, it became clear to me that I would not be able to keep trying random supplements and practices for long, or to even continue to research such treatments myself. So I wrote my previous LessWrong post, partly to understand why more nerds were not interested in researching this insane illness, and partly to see if I could maybe get someone to help me research treatments when I could no longer do so myself.

Needless to say, that plan didn't work either.

I couldn't have known at the time, but this LessWrong post ended up being published right around the time of a dramatic change in my health and my worldviews.

As it so happened, on May 28, 2024, I had a virtual appointment with one of my naturopaths. At the time, she had put me on a course of nystatin, an anti-fungal medication, for a candida infection that appeared on my stool test (the same stool test from above; her reasoning was that the antimicrobial herbs I had used previously were not hardcore enough, and that the candida was probably still affecting me). I had been using nystatin for over two months, crushing the tablets and drinking it in water because I could not swallow the tablets. [5] So at this appointment, on May 28, 2024, the day after I published my previous blog post, my naturopath told me that since it seemed like nystatin wasn't doing anything, I could discontinue it. So I did. As soon as I stopped taking it, weird stuff started happening to me like a recurrence of hunger attacks (which hadn't been happening in a while), and diarrhea (which I usually never get). I asked my naturopath about this, but she seemed unconcerned and just said I should taper off nystatin, which I did. She also didn't have any other treatments to offer me, other than that perhaps I could try box breathing, which is something that of course I had already tried and that I had gotten used to hearing from doctors.

Things seemed to be going okay for a while, but then at the end of June 2024 I took a 30 minute walk around my neighborhood, and around the 20–25 minute mark or so I started feeling very overwhelmed and exhausted. (I was able to walk for 40+ minutes before without issues.) I came home and rested in bed, but the next day I still felt quite off, so I rested in bed for about half of the day. But I kept doing worse and worse, got diarrhea again, my POTS returned, and then summer started for real in the Seattle area where I live (I am very heat sensitive due to this illness). That is when things got very bad.

The summer of 2024 was by far the hardest period of my life. It is a cliche to say that words cannot describe what it was like, but words really cannot describe it. I will attempt to describe it nonetheless.

Essentially, I was barely alive. I was partially bedridden, and when I wasn't in bed I was just sitting in a chair at my desk, most of the time doing absolutely nothing. I slept 10–11 hours but couldn't sleep well (would keep waking up around 2–4am). I couldn't walk to the kitchen even to microwave food for myself, so I had to have caretakers (mostly my father and a friend; my mother was taking care of her own mother in another country) serve food and bring it to me in my room. I was constantly terrified of being alone in my room, and particularly terrified of being left alone in the house, but also I could not tolerate having more than one other person in my room with me. When I say "could not tolerate", it's not that I was psychologically anxious about being alone or having too many people around me, it's that the physical absence or presence was too much for my nervous system to handle. So most of the summer I had a friend just sit next to me in my room, quietly doing things on his laptop while I sat in a chair doing nothing or took naps in my bed. I had very bad cognitive exhaustion/overwhelm even from reading one paragraph of text, sometimes even one sentence; it's hard to describe what this feels like, but my brain felt like it was getting destroyed from the inside. I felt anxious basically the entire time, and would have panic attacks or get upset from the slightest thing (like my father going out to get a takeout burrito, or my friend throwing away the cucumbers in his salad, which some part of my brain decided was unethical and would not stop looping on).

I could not tolerate the light on my ceiling, so I just used the amber bulb by my nightstand for the entire day, and had the curtains closed most of the time. I was extremely heat-sensitive, even more than I already was, and felt hot despite having an AC blasting in my room (my friend called my room the "ice cave", because it was both way too cold for him, and also very dark). I had what I called "microshakes", where the muscles between my ribs were visibly twitching. While seated, my face would get so uncomfortably hot (not to the touch, but "from the inside") that I would periodically have to lie down, which somehow helped to circulate the hot blood around my face to other parts of my body. (At least, that is my guess as to why lying down helped.)

I could eat almost nothing other than white rice, meat or fish, steamed vegetables (but only carrots, kale, zucchini), sweet potatoes with unsalted Kerrygold butter, mandarin oranges, and Kate Farms shakes. All food was prepared completely unseasoned, and I would sprinkle tiny amounts of iodized salt on my food. One time, my father bought navel oranges because the store was out of mandarin oranges, but the navel oranges were so sweet that after eating about three slices I became so ill I had to lie down. Another time I remember eating cabbage and having intense pain in my gut along with tachycardia and being unable to sit up.

I couldn't look at a screen for very much at a time, but sometimes I could close my eyes and listen to something on YouTube for 5 or 10 minutes at a time, and then I would need a break (where "break" means sitting in a chair, eyes closed, doing absolutely nothing, not even thinking any thoughts). Sometimes, even sitting and doing "nothing" was not enough. If a thought entered my head, like something about one of my doctors, some part of my mind took that as a cue to start drafting a mental message to that doctor, but that automatic thought process would cause a mental crash, so if I noticed my mind was trying to draft a mental message like that, I would have to exert a different sort of effort to stop computing that thought, so as to prevent a crash. In general, I became terrified of thinking thoughts for fear that they may cause a crash. I could not form complex thoughts or any thoughts about the future; I was oriented to simply surviving the next moment. In the beginning of the summer, I became so concerned that I was simply going to die that I began to draft a will but had no energy to actually work on it.

My breathing problem got worse, to the point where I lost the ability to speak out loud because I was so winded; I would either type out messages in a chat application on my laptop or scribble messages on scraps of paper and pass them to people. When my breathing was bad, my nostrils would close up and my throat or diaphragm would start choking me.

I could not tolerate music, even music that I previously really liked; it was simply too much stimulation. One of the only "enjoyable" things I could do, but again only 20 minutes or so at a time, with lots of rest in between each session, was to play Mega Man Battle Network 6 , a video game for children from 20 years ago. ( Pokemon Emerald was too much stimulation, because it required too many choices. Stardew Valley , a game that I found somewhat helpful in distracting from my symptoms and disengaging from life prior to summer 2024, became so stressful that I couldn't play it even for a few minutes.)

Strangely, writing things down in a stream-of-consciousness way did not cause my mind to feel like it was crashing, so I was able to write more than I could read. I could of course not do anything I previously enjoyed, like mathematics or programming or thinking about the world. My mind would often just be looping with anxious thoughts, and I had to keep trying to break out of such loops by thinking about simpler, safer things; one time I started classifying the snowflake patterns on my bed sheet. In the evenings when the air was cooler I could sometimes sit outside in the backyard to get some fresh air, but I could not do this reliably.

For the first time in my life, I began showering with a shower chair, and could only shower once every 2 weeks or so.

I could not leave my house, nor was I even well enough to do virtual appointments with my doctors (who by this point had basically given up on me anyway). At this point I realized that I was too ill to receive medical care , as in, trying to get medical care would result in my hurting myself with symptoms, and the medical care wouldn't even help. At one point, I sent a desperate email to one of my naturopaths, who contacted my primary care doctor, who … a sequence of events led to a police officer knocking on my house door for a wellness check. [6]

Strangely, even when seemingly so close to death, I would feel a profound sense of boredom. It felt unacceptable to be sitting and doing absolutely nothing. I constantly felt the urge to read or watch something, and would start doing something for a minute or so, only to feel completely overwhelmed by symptoms and needing to back off again. This was a constant struggle during this period. Eventually I wrote up a list of aphorisms to tell myself, called The Art of Doing Nothing ; it included things like "Every moment I do nothing is a moment that I win. The less I do (now), the better I (will) feel.", "When I feel well is when I must choose to do nothing." (because when I feel unwell, I have no choice), "Don’t make decisions; go by habit." (because decisions require too much thought and lead to mental crashes), "Even thoughts can be exhausting. I stop myself from computing the details of complicated thoughts.", and ended with "This Art seeks to make itself unnecessary: I follow these rules now so I won’t have to for long."

I did have one meeting with a prospective doctor during the summer, to pursue a possibly quite legally sketchy treatment possibly costing tens of thousands of dollars. My symptoms were so intense that even Ativan didn't help to calm down the level of anxiety and malaise I felt.

I also apparently collapsed on the floor once, and my friend had to scoop me off the ground onto my bed, but I don't have a very distinct memory of this.

I could give more details about things I experienced, but I don't know if it would even help people understand. When I read other people with complex chronic illnesses describe their own symptoms, if I had that particular symptom I am like "yup, I know what that one is like" and if I didn't have that particular symptom I have little idea what it's like.

Although I was never diagnosed with ME/CFS, I have found Whitney Dafoe's ME/CFS severity scale (see Figure 3) fascinating given my own experience with severe symptoms. On his scale, I was probably in the Very Severe category (I could use the bathroom on my own without much difficulty, I could shower every 2 weeks or so but only with great difficulty, I could scribble short notes or type short messages in chat, I mostly couldn't leave my bedroom but I could sit outside in the backyard sometimes for perhaps 10–20 minutes at a time, I couldn't do chores at all, I was only around half bedridden), although I had elements of Extremely Severe A (I could not really speak because I was so short of breath), Extremely Severe B (I could watch short videos but not longer ones, I could read a little but sometimes only one sentence, I could tolerate some human presence but e.g. only one person in the room at a time and they couldn't be causing too much stimulus), Extremely Severe C (I could not tolerate music or most types of content on the internet such as social media). In comparison, in 2019 I was Mild (pretty much able to live a normal life other than episodes happening once in a while, and I couldn't drink caffeine), in 2020–2022 I was Moderate (I could hold a part-time job but not a full-time one, could walk for 40+ minutes but couldn't jog, I could leave the house and even travel, etc.). During 2023 I progressed to Severe (I couldn't really work anymore, I was mostly housebound) and this continued to the first half of 2024. As I write this in 2026, I would say I am back to Moderate. But more about how I am currently doing in the final section, "Where I am now, and what is next?"

One of the reasons I waited so long to write this post is that it is simply impossible to communicate what the summer of 2024 was like for me to someone who has not experienced this illness themselves. I could, for instance, say "I couldn't even read or think" but a normal, healthy person would not have the slightest idea what that actually means or what it felt like. And what is the point of writing a post and trying to communicate, if I can't get anyone to understand what the illness, particularly the worst months of it, was like? I don't know if I've succeeded, but the above was the best I could do for now.

In fact, even I am forgetting the intensity of the symptoms. I know how I would describe the symptoms. I know which activities were easy vs possible with some difficulty vs possible with great difficulty vs impossible. But how did it feel , that is something I have trouble recalling experientially. Part of this difficulty may just be brain fog that I still have.

As a more general point, I also want to mention that the excuses and narratives I had used to run my life until this point, such as "I am a smart and creative person" (one might call this the fundamental LessWrongian drive) and "I have worth because I provide value to others" (one might call this the fundamental effective altruist drive), stopped working entirely during this period. I was not smart or creative, and I knew it. I was completely helpless and provided no value to anyone, and I knew it and everyone around me knew it too. There is a terror to all this! And also a sense of "Wait, people still care about me? I still have some worth?" There is, apparently, a reason to keep living even here , and I got to practice living that life and figuring out what that all means. Similarly, I had spent my whole life chasing distractions and cravings. I could no longer eat anything tasty, listen to music or watch movies or play video games, or even go on a walk, and could not even consider more complicated pursuits like romance, career, or starting a family; as in, thoughts about these things did not even enter my mind. [7] When all these options are taken away, is there still value in being alive? I found that the answer, surprisingly, was yes. There is just something about being alive, some survival instinct. Keep going. I don't know how to explain it any better than that. Oh, and also, all the craving and bullshit narratives came back surprisingly quickly once I started doing better. There is a danger in forgetting what the illness was like, and I write in part to remember as much as I can of this experience.

In the following section , I will talk about something called "brain retraining". People in the ME/CFS community sometimes say things like "brain retraining might work for someone who doesn't have PEM, but for people with true ME/CFS (i.e. someone who has PEM), brain retraining and gradually increasing activity is very dangerous ". More generally, people with ME/CFS talk about PEM as the "hallmark symptom" that distinguishes ME/CFS from all other mysterious chronic illnesses. So while I am on the topic of which symptoms I had, I'd like to address the question of whether I had PEM. Probably most readers of this post don't care about what PEM is or whether I had PEM as a symptom, so I recommend skipping this section unless you specifically came looking for a section that addressed this.

First of all, to make sure we are all on the same page, what are the distinguishing features of PEM? The MEpedia page on PEM seems pretty good to me, and lists the following distinctive characteristics of PEM:

I read a tweet once (that I can no longer find) where someone suspected that people can start with some other named condition (like MCAS or dysautonomia) and then gradually "progress" to ME/CFS, and something like this seems consistent with my experience.

My conclusion is: yes, I did have PEM, but it was not really a thing until 2024. Starting in 2024, it became a common thing, but for whatever reason, it's not a central concept for me, the main way in which I distinguish my experience and the framework from which I analyze my experience (to distinguish my pre-summer-2024 experience from my summer-2024 experience, I would emphasize more the loss of capacity to do basic things, and the intensity of symptoms). Does this mean I didn't have "real" PEM? Overall I feel kind of confused about this topic!

I didn't know what was happening to me. One striking aspect of what was happening, however, was that I was rapidly becoming sensitive to things I had never been sensitive to (light, sound, presence of people in the same room as me, etc.), which told me that maybe the new symptoms had something to do with my nervous system. This vague idea, along with the fact that I was too sick to receive medical care (either in person or telehealth), made me more open to treatment approaches that try to calm down the nervous system. (Yes, I was still looking to try things. I was unwilling to just sit there and wait until I died.) Obviously, my illness was physical, but being a bit calmer couldn't hurt.